Tuesday, April 1, 2014

April-Autism Awareness Month: Nothing Special Here, It's Just Our Daily Lives

Repost from 2012.  My thoughts and perspectives have not changed.

Now begins autism awareness month. Just letting everyone know that I am not doing anything different than I normally do. I am not going on marches, walks or to rallies. I am not wearing blue. I am not putting a puzzle piece on my car. And no, this is not because of the on-going feud between self-advocates and Autism Speaks. This is because everyday in this house is autism awareness day, week, month and year. We do not need to change anything we do in this house to "celebrate" autism awareness month. We are autism awareness.

They walk out into the world and the boys are dealing with autism and society. They walk into a store and the boys are dealing with autism and sensory stimuli. They walk onto campus and they are dealing with autism and auditory processing in classrooms. They walk onto campus and they are dealing with abstract reasoning issues and language processing. They walk into a restaurant and they are dealing with autism and the sights, sounds and smells of a new environment. They walk onto an airplane and the boys are dealing with autism and a fear of flying, change of schedule and an unknown adventure. They do their chores and they are dealing with autism and distractions and organization.

Everyday the boys encounter people and places and incidents that have an effect on their lives. When people interact with them these people learn about autism. When society sees them, society learns about autism. When professors contact the disability office to understand autism better, these people learn about autism. When doctors ask questions when they deal with the boys, these medical professionals learn about autism. When they walk onto campus and interact with their fellow students and these young people see how intelligent, genial and kind they are, more than anything else, these social interactions have a bearing on the future and how autistics are perceived by society.

Does prejudice still exist? Absolutely. That is what happened at CM1's job from last semester. (This was an incident in the fall of 2011. Since then CM1 and CM2 have had internships at which they are very welcome and very successful.) Yes a  complaint was made. They told me that it was taken care of...I did not request that he be reinstated at his job.  I am absolutely NOT sending him back into a situation where he could be bullied, picked on or made to feel inadequate. That would not be autism awareness that would be making my child a target and he has had enough of that in his life. If others want to live their lives like that then so be it. Go ahead. But that is not going to happen with my children.

Sue the school you say? You want me to sue the school that allows them every accommodation known to law and man. The school that allows them leeway in behavior at times because they understand autism and how hard it can be to process issues. The school that works with us and their doctors and their para and their entire village so that the boys may be able to access their brilliant minds. That school? Well no I will not sue under any circumstances that open, welcoming and highly understanding college for the misdeeds of one ignorant man. Sometimes in life you need to know when to hold, fold and call too. You really do need to know who your friends really are and how to say thank-you as well. That too is autism awareness, not to be perceived as ungrateful and self-centered louts.

By the way,  sorry to all those who are mad at Autism Speaks and all those who support Autism Speaks, but I have issues in my life and who did what to whom and who dissed whom and whom represents whom is not one of them. Perhaps it is as we discussed in my last post, youthful passion that has dwindled. (here) I do not know. What I do know is that I don't like gimmicks. I don't like nonsense. I don't like disrespect. I don't like that some people treat my children as if they are specimens in a zoo. So fight amongst yourselves all you want. I don't care anymore. If this means you won't come back here too, then so be it. If it means you unfriend me on Facebook or unfollow me on twitter, then so be it. I have real fights to fight and real day to day problems to solve.

What I care about is that my boys are entitled to be seen on a daily basis as human beings with rights and freedoms as everyone else year round. That is what I am fighting for. Yes I know that is what the advocates are fight for too, but they are not here with me in my house, in the boys' school, at the supermarket, at the restaurant, at the airplane or the hotel. I and hubby alone fight this fight for the boys. We always have stood alone. No one has ever held our hands. My demand is that these advocates remember that their view is not the only one and that others do and have a right to disagree with them. So fight amongst yourselves, just make sure in carrying on, you don't fuck it up for everyone else.

You know, we fight everyday. Not for just a day, a week or a month, so everyone in the world can feel good about themselves. Pat themselves on the back. Talk about how society should support those with autism. How society needs to find better educational tools for those with autism. How society has to find better supports for children as well  as adults, most definitely for adults with autism.Nope. I am not going to allow society to pretend how great they are because they heard a lecture about autism, talked about issues for an hour or two, or gave $5 for an autism walk or thought about how they might have known, possibly have seen, most decidedly came across someone with autism. This lets society off the hook too easy. Well I won't.

So society can make itself feel good about all that it does for the month of April. We will be seeing society the rest of the year too, every month, every week, every day, every hour. We are still here after April. Whether society likes it or not. And its how society treats my boys during those 11 months that really count. Concern doesn't count when society can give itself a public medal for how great they are because of what they did in April. It only counts when they care in August and January when noone  is looking and its not considered the "cool" issue of the moment

Honestly, we cannot control every aspect of life and every aspect of society. All we can control is the little space that we inhabit on this world. So no, I am not doing anything different than I already do for autism awareness month. I am not going to ask the boys to do it either. They live their lives on their own terms, and that in and of itself provides society with knowledge and autism awareness. The boys' lives are autism awareness without them even thinking about it. Their lives are autism awareness because they exist and they are part and parcel of the world.